Thursday, April 30, 2009

A year of no smoking for my husband. Words can't express how proud I am of him. To be able to pull away from years of an addiction on his own, cold turkey. That takes some amazing strength. It shows me that his family is important to him. I know he wants to be at his best so that he can play sports with J and be here, in great health, to see J (and any other kids we might have) graduate from college. Such a wonderful feat deserved a celebration. I know that J and restaurants DO NOT get along. Something about the lights, the noise, the people, and of course sitting still, just drives him crazy. There are, however, rare occassions that he does behave and I always make sure to take note of where we were, what was different, and how I can make that happen again if we decide to go out again. I still was wondering if I should take the risk and go out to eat, or just order take out and surprise my husband with that. Well, J seemed to be having a pretty good day so far, so we headed to party city, got my husband some balloons, and dropped them off at PF Changs where I made us reservations for 6:30, early enough for J to just be up from a nap and hoepfully in a good mood. I also spoked to the hostess and requested a table in the back of the restaurant away from too much traffic b/c I know that makes J nervous. She said not a problem. J cried the ENTIRE 20 minute ride home from dropping of the balloons. He was crying and asking for something. He was using the same word everytime I aksed him what he wanted, only it wasn't English and I cannot not translate well while driving! He knows a sign for just about everything he could ever ask for, but he was using his sign language either. I knew right then and there that I should probably just go get the balloons and cancel the reservations. I came home and put J down for his nap and then just prayed for a good night with my family. I wish I could say it was a good night...

We got to the restaurant and the hostess could not have given us a better table. We were in the back of the restaurant, in the corner and she placed J's highchair against a wall and blocked off the booth behind us. So there was no one sitting next to him but me and a wall. PERFECT. Or so I thought. My husband went to the restroom and the hostess was off to grab his balloons to surprise him. Well immediately J got irritable. He pushed the menus off the table, tried to throw the candle, and then was frantically grabbing for his bag. I opened his bag and pulled out a book, he screamed at me b/c he didn't want the book. I pulled out a snack, he screamed at me. So I just gave him the bag and let him figure out what he wanted. He pulled out a birthday candle and started singing happy birthday. Great, he's entertained! Yeah for less than 60 seconds, then he breaks the candle in half and throws it to the floor and starts screaming. By this time my husband made it back to the table and the hostess was coming with the balloons. J was screaming non stop and I was trying to look him in his eyes and call his name to get his attention. Eye contact is very rare when we are in public. He refuses to make eye contact with ANYONE, including us, in public. So there was no calming him down. My husband was getting up set, I'm saying "J, J, J, CALM DOWN. TELL ME WHAT YOU WANT." Mind you, I have to yell to be heard over his screaming. The balloons come and my husband could care less. The surprise didn't go as planned. He didn't even want to look at the balloons to see what they said, he was so frustrated. So I had to yell at my husand over the screaming "Those are for you. I picked them up and dropped them off here for you b/c we are very proud of you for quitting. Congratulations!" Then I grabbed the banshee and headed to the bathroom with him. When I can't gain control, I remove him from the situation. I swear the walk to the bathroom was a mile long!! We get to the bathroom and he has completely recovered from his fit. I sat him on the counter and I said "J, look at Mommy." He looked me right in the eyes. "Wipe your face." He wiped his face immediately. " You have to stop crying okay?" "Okaaay." "You have to be a big boy today okay?" "Bigboy, mmmm hmmmm." "So are you ready to be a big boy?" "Mmmmm hmmmm." "Okay well let's go." "Le gooo." Notice the complete turn around?? He is like a totally different child when I remove him from the restaurant. He can hear, he can respond, and he can look me in the eyes. I was so bummed b/c then I really knew that this was just not the best idea. And hurt b/c I really wanted to celebrate with my husband. The night didn't get better either, so we rushed through dinner and headed home.

I use my blog to vent, so readers will only read my honest feelings and thoughts here. I also use my blog as a journal, so I can come back to it when I need to know when J had a bad day, when certain behaviors surfaced, and what caused the problems that day. It's already helped me to put together a complete developmental outline for his appt in July, so I am glad I've done it and will continue to do it for his sake and mine. Every time I have a night like we had last night, I seem to fall into a funk. Sometimes wondering what did I do wrong as parent to have lost control of my child. Then I constantly remind myself, J is not always misbehaving. At home, he is fine. He listens, he responds, he behaves. In public he's a totally different child and I know there is an uderlying reason for that. I think the sadness comes from realizing that right now, being a mom is not going the way I expected it to, if that makes sense. I love my baby, unconditionally, and would never want to trade him for the world! He is my Pootie Bear. However, there are somethings that I looked forward to doing with my child once I became a mom, and I know every other mom looked forward to these things as well. Like playing WITH my child. He doesn't play with us. He will play around us, but not with us. I've tried on several occassions to play with his trains with him. I get on the floor, and I get one of the MILLIONS that he isn't playing with and I push it around and show him how much fun it is to play together. He comes over and takes the train away and continues to play on his own. And if I continue to grab one of the millions, he will get angry and throw every single train out of his room, that way neither of us can play with them. We've tried outdoor toys as well. Take his T-Ball set for example. I figure, okay this will be fun for me to show him how we can play together. I'll show him how to hit the ball and then I will run off to get his ball for him and put it back. Then maybe after a few times he'll want to mimic me and when I hit the ball he'll run to get mine. Well, I set it up and showed him to hit the ball. He actually clapped for me! YAY! Then he reached for the bat and hit the ball himself. I went to get the ball for him and he had a tantrum. He didn't want me to get it for him. I placed it back on the T and he kicked it over and walked away with the bat, and since then, the bat has been his telescope. And no one can look through his telescope with him. This happens with us and with other kids. He wants to play alone. As a mom, I want to play with him, not watch him play. The only time he will play with us is if it's rough housing. My husband likes that though ;) Another thing that I am missing as a mommy is the opportunity to cuddle him, if even for 5 little minutes. It does not happen and has not happened since he started walking at 10 months old. Everyone says, boys are not cuddlers. That could be true, but J resists it. Even when he's having a bad day and I just want to rock him to sleep, he will get fidgety, whine, and push his way out of my lap and climb in his bed and go straight to sleep. When he gets hurt, all he wants is a quick kiss, no hugs or cuddles needed, ever. I miss that as a mommy. I know alot of this could have to do with his sensory issues and possibly other underlying issues that we are waiting to have him tested for, but it's still hard for me. After a tough night like last night, I would have loved to end that by rocking him to sleep to help him to calm down from the overstimulation, but that's just not him. But I know today he will brighten my day with his sweet kisses, silly faces, big, brown eyes, and singing his favorite word of all "Mommmeeeeeeeee!" I love him and I will stay strong for him.

Wednesday, April 29, 2009

Well, I didn't have to drive to Laurel to see the derm afterall. The Dr called in an ointment that should help with the rash. I have to discontinue using the steroid spray for 3 days and then restart it and keep an eye on the rash. If it continues to get worse then I'll go in to be seen.

Did I mention that J's new favorite phrase lately has been "Ugh NAGGY!!" (ugh nasty)? Well that and "HELPMEEEE!" LOL. And he's really been trying hard to put two words together now and doing an excellent job at it. Well today I heard him in the kitchen playing with the dogs. Our male schnauzer is getting over a UTI so he usually has his leg cocked while trying to soothe his "stuff" if you know what I mean. I'm in my closet when I hear Jayden stop playing with the dogs and say "UGH, NAGGY!!! PEE PEE!" My dogs are housetrained, so I knew what had just happened and I hope J doesn't have nightmares about it! lol!!

Finally, today marks an entire year that my husband has gone without a cigarette. I am so proud of him, and since he has just discovered facebook, I'm pretty sure he won't be visiting my blog today so I can tell you that J and I have a really nice surprise for him in a few hours!! ;)

Growing up, I always heard my mom say "If it ain't one thing, it's another." I've come to learn, that's life! One thing after the other. Well, I blogged a few months ago that I have alopecia. I saw a dermatologist for it 3 weeks ago and he said that sometimes people get alopecia for unknown reasons (stress maybe?) so he wanted to just treat the alopecia itself for 6 weeks. If I don't respond to the treatment of the alopecia alone, they would run more tests to see if there is an underlying reason to the alopecia. Something I am praying is not the issue. Well last week when we drove to destin, I noticed a pain behind my ear, on the same side as my bald spot. It was very tender and I felt 3 little bumps and asked my husband to look at them for me. He didn't notice much, so I just ignored it. By the time we were headed back home, the spot became more tender and I had my husband to check it again and this time he noticed some redness and more little bumps. I knew it was from the steroid spray, but I also read on the patient instructions that a rash from the spray is a common side effect so I didn't think it was anything to worry about. Now I should admit that I try not to look at the bald spot in the mirror often at all b/c waiting for my hair to grow back is like watching a pot of water waiting for it to boil. So I rarely look at it, hoping that when I do look again I'll notice a significant difference. Well the pain, tenderness, and itching has been getting worse this week. I can't even brush that side of my head b/c it hurts so bad. So last night I looked in the mirror at the spot. It's red and inflamed and there's a very visible rash covering the spot. The rash was NOT there when I started the treatment :( It's also everywhere that the spray has touched, even under my healthy hair since the spray drips when I apply it. So I called the clinic (which is 2 hours away from me) to leave a message for the nurse, hoping she'd say "Oh that's a common occurance, we'll call something in for you to give you some relief and you can continue the treatment." Instead this is what she said "So the rash wasn't there when you came in? Well that sounds like a reaction to the meds. Discontinue until I consult with the Dr and I will give you a call back later on today." I'm sure the Dr will need to see this rash with his own eyes in order to treat it. So I'll probably be driving 2 hours to go to the clinic. Hopefully the little bit of fuzz that has grown in since starting the treatment will hang on!!

Monday, April 27, 2009

What a difference! She listens. She asks ME questions. She explains things. She attempts to FIX what's wrong. All things that the other GI docs did not do, seriously.

I was overwhelmed when we walked in b/c I was basically going in there having to explain to her over 2 yrs of GI issues that have gone unresolved. So I had to start from infancy when as a newborn he couldn't hold down his milk based formula, was switched to soy, diagnosed with reflux, diagnosed with MSPI, and was chronically constipated. However, from that list, the only thing that was treated was the reflux...so I thought. I told Dr U about the results from his EGD in February. He had stomach ulcers and duodenitis. She asked what was done to treat that and I told her that the dr told me to continue giving him his 15mg of prevacid and to just follow up as needed. She shook her head. She said that first of all, 15mg of prevacid is just not enough for him. It's not enough for his reflux and it's not enough to treat the obvious build up of acid he has sitting in his stomach which would explain the stomach ulcers. She really wanted to put him on something stronger than prevacid, but decided to see how increasing his dosage would help him first. Then I told her about the response he had to the Gluten free diet. She said that the constipation, duodenitis, and the positive response to Gluten Free is saying Celiac Disease and she cannot understand why the previous GI docs did not do the biopsy for Celiac while he was under anesthesia for his EGD. I told her that I did mention Celiac to the previous Drs and they brushed me off b/c "celiac patients have chronic diarrhea, not constipation." Dr. U disagreed, of course! Celiac patients have constipation as well. She doesn't want to do another EGD on J if she doesn't have to b/c he'd need to be put under again, so she wants to retrieve the records from the previos drs and see if she can tell anything from that. There's a blood test she can do to test for Celiac, but he'd have to go off of his GF diet and the test is not always accurate for toddlers, so there is a chance that he will need to have another EGD done for diagnosis. She pressed on his belly and told me that she could feel hard stool in his bowel. He had a BM on thursday and had a really hard time going, but that was 4 days ago and she immediately FELT a backup. It has me wondering why the previous Docs didn't feel anything when my child was going 7-8 days without a BM. So Dr. U says that she is going to run multiple tests on J b/c the key is to find out what is causing him to have some many GI issues and once we find the problem we can treat it. But first things first, correct the chronic constipation he's had going on for over 2 yrs! So she prescribed a stool softner for him to take daily. It has no taste and I mixed it in his juice but J told me that it is "naggy" and he wouldn't drink it. I'm sure he'll drink it when he wakes up from his nap though, lol. She's going to request his records from UMC and I'm going to email her the pictures I have from the EGD and she will follow up with me by Friday to decide what she wants to do next. Hopefully we can figure out what's going on with him. A huge part of me is hoping that he does not have Celiac Disease, b/c now he's showing more interest in eating, yet he's so limited b/c of the GF diet. But then I have to remember that he's possibly showing more interest in eating b/c his stomach feels better thanks to the GF diet. It's tough, but we can deal.

While we were waiting in the waiting area to be called, an older woman was playing with J. She held out her arms and he went to give her a hug so she picked him up and started talking to him. He babbled but didn't say any real words, so I knew what her next question would be. "How old is he?" I am getting that alot now, and always right after people try to talk to him. I often wonder if it's b/c he looks older since he's tall or should he really be talking all of the time at 2.5. I've been around kids all of my life and while I have heard 2.5 yr olds talk, I thought that some of them do still babble from time to time, but maybe I'm wrong. I told the lady that he was 2.5 and she asked if he was really quiet. I told her that his speech is delayed. He got down to play and was babbling to his reflection in the floor, but no real words. He has a vocabulary, but when he has a lot to say (instead of just identifying something) he babbles b/c he cannot put two or more words together well. The lady asked me if he was in speech therapy and I told her he is. And then it just got weird! LOL! She basically gave him a speech therapy session right there in the waiting room! Okay, not exactly, but everytime he went over to her, she was telling him to say this and say that. J didn't say anything but babbling. It was so weird. Then she asked me if he could hear. I know she meant well, but we were in a waiting room full of people and I felt like all eyes were on us now. I told her his hearing and his comprehension is fine. He fell backwards while he was playing and I said "Uh Oh are you okay?" and J said "Okay!" and the little old lady told me, "Did you hear him?? He said 'Okay'! LMAO!! I just smiled and nodded. He says far more than just 'okay' lady! But I guess this is something I need to get used to as he gets older. People are going to start to notice and they are going to start to ask questions. I have to remember that they all mean well and that his delay is just that, a delay, and he will catch up soon.

Saturday, April 25, 2009

A certain someone in this house has a new favorite food! I ended up freezing the nuggets last night and I put three of them in the oven for him today, with his sweet potatoe fries. As usual, I placed his food on the counter to cool off. He saw the new food on the plate and was very curious. I walked out of the kitchen and he was right behind me, only he had his plate of food in his hand! LOL! I put him in his chair and reminded him that it was hot. He blew it a bit and then stuffed a nugget in his mouth. By the look on his face and the slightly open mouth while chewing, I knew it was still hot but he wouldn't spit it out. He ate each and every nugget all before he even touched his fries, which is a first! He usually attacks those fries first. So it looks like I'll be frying up batches of those nuggets weekly and that's fine with me b/c a small package of Ian's GF nuggets from the freezer section is close to $5 and he doesn't even like them!

Friday, April 24, 2009

One of my husband's coworkers had a BBQ today that started at 7pm. Usually it's something we would skip b/c J's bedtime is 8:30, but we figured we'd go and let him stay up a little later if he could handle that. Well they didn't get the meat on the grill until close to 8, and we didn't want to eat and run so we ended up staying at the house until 10! Jayden was tired and cranky, but he could have been much worse so I'm not complaining. Anyway, we got home at 10:30 and I put him straight in the tub b/c he'd been playing in dirt. He took a quick bath, flashed Daddy (his new favorite game!), then got his nighttime sensory massage. When I put him down he did the sign for milk, so we went to the kitchen and got his milk. He only drank half of it and came and gave me the half empty sippy cup and signed good night. Then he said "Nigh Nigh" and walked out of my room. I figured he was just going to play with his daddy, but then I hear this sweet voice over the monitor "Mommy, Mommy, Mommy!!" I yell "Mommy's coming!" and then I hear "Okay." OMG, so sweet! I get to his room and he is sitting in bed ready to be tucked in! When I walked in, he laid on his pillow and had his hands ready for prayer. I tucked him in, said his prayer, and kissed him goodnight. All is quiet. Wow. He's getting to be such a big boy!

Today at the BBQ someone mentioned how he is a bundle of energy, and he truly is...he's nonstop. But I said "Well he's a good sleeper at night, I can give him that." And certainly is! Bedtime has never been a fight with him...naptime...that's a different story! LOL!

I wanted to share with you a pretty good chicken nugget recipe I found online for J. Fast food chicken nugget is out of the question since he's gluten free so finding a recipe as similar to the fastfood nuggets as possible was important for me to appease my very picky eater! Anyway, I made them today and the look is VERY similar to that of the chik fil a nuggets. The taste is just as good, nice and juicy and slightly sweet. They are pending approval of Mr. J once he gets up from his nap, so I will update with the rsults once he gets up! Here's the recipe I used:

I combined all of the dry ingredients in one bowl and wet ingredients in another. Cut up the chicken breasts and dipped them in the wet ingredients, then coated them with the dry then placed them in the deep fryer. You have to be very careful with the temperature of your oil b/c obviously the cornflakes burn quickly (don't ask how I found out!). It took about 4-5 minutes for them to cook through completely. I plan to freeze the leftovers and reheat them in the oven for J.

I hate to end a recipe post with this info, but I am wondering if the GF diet is actually helping him now. When we first started it, he went from having a BM every 7 days to having one every 3-4 days and it wasn't nearly as foul smelling. We've been following his diet really well lately, but yesterday he became extremely constipated and was MISERABLE. He walked through the house whined, eyes welling with tears. He looked so sad and I could tell he was in pain. He tried sitting on the potty and he really tried to go but he couldn't. I put on his diaper and told him he could go in his diaper and he did but it hurt him so badly that he had the saddest face, like he needed to cry but didn't want to. Then he looked at me and said "Mommy..." and walked over to me holding his belly =( I hugged hima nd rubbed his belly and he started shaking and locked up his joints. It was so scary! I took him to his room and helped him to pass the bowels and sure enough, they had blood in them. SIGH!!! I'm am so tired of this. My baby is still suffering and I still have ZERO answers!! He has had a dirty diaper FOUR times since then so now I'm wondering if he was impacted for a 4 days. And today, his behaviors has been awful, screaming, losing his temper, slapping himself and banging his head. I got so frustrated today I had to call my mom and she heard her grandbaby crying miserably in the background and she told me to take him to the ER and DEMAND that they find out what is wrong with his stomach! I wish it was that easy, but I know they'll say, "He needs to see a GI..." so Monday he sees the new GI and I hope she's ready for us b/c we are overdue to get some answers to this problem he's had for 2 yrs and counting!

Tuesday, April 21, 2009

The EI coordinator called me today. She said "Hi Mrs.Johnson. I was calling to let you know that your therapists will not be coming out to see J this week."

You don't say?!?! They come on Mondays. Today is Tuesday. Even if they didn't call me, I think I'd have figured it out by now! I didn't tell her that though...hehehe. Just thought it! I told her that I spoke with his therapists and they explained the lack of funds issue. She then asked me if I had thought of any alternative routes for J temporarily. I asked her if there were any non contracted therapists through First Steps that would be willing to see J, but she said not at the moment. Unfortunately we cannot afford to pay out of pocket for the sevrices, and I have no idea why they are so dang expensive in the first place?!?! So no. I have no alternative. The good news (I guess??) is that they will pick him back up in July once they get their yearly funds. I asked her if she was certain that J would be picked back up and she assured me that he would be since he was already actively receiving services. So he'll miss 2 months of therapy. I am going to do what I can to keep him on track, but I'm really worried about the occupational therapy. It's just extremely hard for him and he was finally started to respond to the sessions. Now I know he will regress and it will be hard to get him back on track. Everyone is suggesting that I just do what the therapist does, but trust me when I tell you it is not that easy. The main reason is b/c any child will work better with someone other than their parents. It sounds crazy but it's true. It happens all the time with my photography business. Parents tell me that their children HATE to take pictures, but I never have a problem getting great pictures of their kids and most parents leave the sessions saying "Wow s/he NEVER did that for me!!" Well, I'm a new person who only comes around once in a while, so it's intruguing to them. Same thing with J and the therapists. He knows them, but they only come once a week so it's almost like a treat to them and he doesn't mind spending 45 minutes with them. The other reason I know I cannot completely take over OT is b/c it's so rough for him and rough for me to watch him. Occupational therapy generally helps him with things that he normally should have no problems doing daily. She's helping him to be able to successfully perform his occupation, which right now is to be a child...laugh, play, learn, grow up...But it's hard for him since he's dealing with the sensory issue. He extremely turned off by different textures, he hates to wear clothing with tags, he doesn't eat, he can't sit still, he bangs his head when he's frustrated (although his diet change has decreased that tremendously), he falls ALOT, among other things. But she helps him to deal with these things. She started off working with his feeding issues. He went CRAZY!!! It was traumatizing for him and it made me cry to watch him go through that. I planned to ask the therapist to hold off on feeding therapy for a while, but she decided to stop on her own b/c it was just too much, so that's definitely something I'm not willing to do on my own. For the past few weeks she's been working on him with different textures. One that repulses him the most is dry oatmeal. He cries and gags when he has to touch it and usually gets up and runs to my lap for comfort. I NEVER want to be the person on the other side of the table who is making him do something that he doesn't like. I know it will help hima nd it's what he needs, but I'm his mother so I want to remain the person he can run to for comfort. So taking over OT sessions is not going to be an easy task.

I do, however, plan to continue doing sensory exercises with him. Those should keep him close to where he needs to be once the OT comes back. I ordered him a weighted vest which is simply a vest that I can add weights to. The extra weight give him added pressure since he is a "sensory seeker". It also helps his balance and could help with muscle tone, but that's not one of his issues. He hates to wear it b/c it makes him fall alot, but when he learns to not fall then that's helping his balance. I also got him a chewy tube, which is basically a rubber teething toy shaped like a T. When I gave it to him, he immediately started chewing on it. The tube stimulates his oral muscles and help him to develop oral motor skills, so hopefully he won't have any problems chewing adult food once he starts eating more. Also, the chewy tube can work muscles that will help develop his speech more. I often find him watching TV and chewing away on the tube. I may have to carry it along when we go to noisy places b/c when he gets nervous he chews on his shirt (or my arm!!) so I wonder if the chewy tube would help to calm him. Other things I can do can easily be masked as games, like ring around the rosey, jumping up and down, hand walking, etc. Anything to get the senses going. All of that will help him with the little issues, but I cannot and will not touch the bigger issues. Hopefully he will hang in there until July.

Monday, April 20, 2009

I got a call at 8am this morning from J's OT. She called to tell me that unfortunately, they can no longer see the kids who are funded through EI b/c they ran out of funds and EI will not be able to pay the contracted therapists. So his speech therapy and occupational therapy has been cancelled due to lack of funds. What pisses me off is that I have YET to hear from the Early Intervention coordinator. She should have been the one contacting me to tell me of this issue. That way I can ask her the questions I have as far as where to go from here b/c J obviously NEEDS the therapy and without them, he will regress. Some of you older readers may remember how hard of a time I had getting in touch with her about getting J his OT. It took WEEKS to get her to return several messages I left for her. I am so tired of working with this program. They are so unorganized and don't seem to care. When I worked in pediatrics, I always treated the kids and the parents the way I would want my child and myself to be treated in that situation. If it were their child going through what J is going through, I am pretty sure things wouldn't be so laid back and unimportant. Don't get me wrong, I know that the terrible economy can be the cause for their lack of funds at the moment, but it's just they way that I had to find out and that I did not get a call from Early Intervention. It was not the therapists responsibility to call and tell me this, but they did b/c they know that our particular coordinator is not good at making phone calls when she should and they didn't want us waiting home on them.

So now my baby is once a again, trapped in the system. He can't continue getting the services he needs b/c EI ran out of funds, and we cannot go private b/c no one in this area accepts tricare insurance. I have no idea what we will do from here, but I'm giving it to God...

Saturday, April 18, 2009

Of course you all know that I carried my camera with me to the beach, hoping to get some shots of J on the beach. Some that I can frame in our home. I've come to realize that he is the world's most stubborn child when it comes to taking a picture of any sort. I never ever have such a hard time with clients' children. Even if they are incredibly shy, I can always get eye contact in some of the pictures. With J, I can't even get him to look in my direction. He will look at me and smile with those bright brown eyes, but as soon as I have the camera pointed at him he refuses to look my way. Doesn't matter what I say and trust me I've tried it all... "Look Elmo is here!!" "Is that Spongebob I see??" "Do you want some ice cream?" " Oh look at how silly mommy looks (and sounds!!)" He will look at the ground the entire time.

So, there will be no cute pictures of J on the beach. I'd be lying if I said I wasn't dissappointed. But I have some SLAMMIN scenery pictures and some new shoes :D

Sunday, April 12, 2009

Happy Easter everyone! It's gonna be just the 3 of us today...for the first time ever, we are spending Easter away from the rest of the family. It just wasn't in the budget (and honestly I didn't really feel up to it) to drive to New Orleans and back and then drive to Destin on Thursday. My parents planned to come out here today, but mom couldn't see all of her patients on time. So here we are and I admit I am a little down about it. We are going to have dinner as a family somewhere today...probably Olive Garden or Outback steakhouse and then we'll come home and have pecan pie for dessert. I'm about to hide some easter eggs around the house for J to find, if he's even interested in that! The weather is really nice, so maybe we can go on the rez and fly a kite with J for the first time!! And take some pictures?? WOOT!! Happy Easter everyone!

Tuesday, April 7, 2009

So, I found out that there is milk in the bread mix I raved about below...powdered skim milk, to be exact. I found this out AFTER J ate 3 slices. Looking back, his behavior was pretty bad and he whined alot and had a really hard BM this morning. I am thanking God that he simply has an intolerance and not a life threatening food allergy, b/c this is not the first time I've messed up :( So, the loaf went in the trash and I headed to the store and stood in the bread aisle for a good 20 minutes before leaving with a package of Bob's Red Mill bread mix. It's gluten free and dairy free (I used rice milk in the mix). The ingredients list soy lecithin, but I've read that soy lecithin is okay for a soy intolerance b/c it's just an oil...however, someone PLEASE correct me if I'm wrong! I put this bread mix in my bread machine, and instead of using the gluten free setting, I used the setting for white bread/rapid mix. It kneaded the dough for 45 and then baked for an hour and 15 minutes. Man, I thought that last loaf of bread was a success, but seriously, this one hit the mark big time. It is soft and fluffy. Not the least bit sticky. And finally I was able to hear the signature hollow sound when I tapped on the top of the loaf. It was so easy to slice and did I mention how fluffy it is?!?! So far, it has failed the J taste test, but I think last night his tummy was still hurting from the other bread he had ingested b/c he wanted nothing to do with bread. So as soon as he will accept bread again, I'll let you know how he liked it :)

Saturday, April 4, 2009

Well, it has been a really tough end of the week here in the Johnson household. It started on Wednesday. I sat down to eat lunch with J. He was having his usual, turkey franks, and I was having a turkey sandwich. I was told by a friend of mine that once J's gut starts to heal after starting the GF/CF diet, then he will slowly show interest in other foods. J looked at my sandwich and started giving me sweet eyes and yelling "Hiiiii!!!! Hiiiii!!!" and then he held his hand out and signed "Please"...weird...J has NEVER touched a lunch meat sandwich of any type during his 2 yrs of life. But could this mean his gut is feeling better and he wants to try something new?? Well I'm not eating GF bread...Meh, a little bit shouldn't hurt. Besides, who could say no to that sweet face...Handed him half of my sandwich and he ate the entire thing! Oh boy. We'll just have to wait and see how it affects him.

Thursday: whining, falling out, breaking things, spinning around hysterically on the floor, banging his head, and flapping his arms in frustration. All things he hadn't done in weeks. He also could not fall asleep no matter how long he tried. And he was VERY VERY CLINGY. Friday was 10 times worse...imagine that!! He was very out of sorts Friday morning and had the HUGEST fit when I dropped him off at the YMCA childcare. I didn't get much of a workout though b/c an hour later the worker came to get me b/c J had a strange BM...definitely the sandwich.

But it made him so happy!! So Momma had to find a solution. So off to target we went and found a bread maker with a gluten free setting (wasn't looking for that feature but what a great plus!) and to rainbow foods for Gluten Free Pantry-Favorite Sandwich Bread mix. I also bought some GF muffin mix to try and give him something different for breakfast. I can't forget to mention that I tried my hand at baking him GF bread 3 times before (using the oven) and each time I failed. I'm sure I was killing the yeast and I do believe the oven temps affected it as well. So I was anxious to try the bread machine. It was so incredibly easy. Add liquid, then add bread mixture, then add yeast to the top. Adjust settings on machine and press start. The machine does everything else, even activate the yeast! The bread was so big and fluffy, although it did still have some stickiness to the middle. I immediately thought it was a success but that wouldn't be known until the next morning when J was ready for lunch. I decided to toast the bread b/c I think no matter what, GF bread is going to be a bit chewy/sticky and J doesn't tolerate that well. Once I toasted it I spread on his peanut butter and jelly. He watched eagerly. I gave him a piece of the crust and he gobbled it up!!! Then he ate the rest of the sandwich with no problem at all! So either my child was just determined to eat bread no matter what it tasted like, or this was a true success!! Either way, I'm just glad we've hopefully found a way to get him to still be able to enjoy his favorite! PEANUT BUTTAH JELLAY!!

Welcome to our blog!

Thank you for visiting our blog! We are happy to share a little bit of our lives with you. After years of battling infertility, we adopted our son, Jayden, at birth and 5 years later I gave birth to our newest addition, Elias. God is so good!!

This blog is a mixture of personal thoughts, daily battles and triumphs with Jayden's health, and about our experiences as a family of 4. So sit back and enjoy our crazy life!